Monday, April 5, 2010

Madder Music, Stronger Wine

"I cried for madder music and for stronger wine"- Ernest Christopher Dowson

A few months ago, I received an e-mail from a very old and dear friend of mine, a guy I first knew from the days I spent as the lead singer of a punk rock band in Boston, back in the mid-1980s. He was a guitar player in the band, and along with the e-mail came a series of photos of me taken by a mutual friend, sometime in 1986 or 1987, best that I can figure. I have a kind of hazy recollection that these pictures were shot during some all night party, but I'm really not sure. Regardless, seeing them set off a mixed up jumble of emotions and feelings as I stared at images of a young me who had no way of knowing what the coming years would bring.

Portraits of the Kamikaze as a young man . Click above for larger image .

My first reaction to seeing the photos was, "Gadzooks, was I skinny!" Of course, I do remember that I was a skinny guy, but time did a pretty good job of making me forget just how skinny I was. Good thing I didn't stand up and turn sideways in those pictures, or I would've been invisible. I think I was the first "stealth" human...

After I got over the skinny shock, I started contemplating the huge gap between what I'd expected of the coming years, and how things actually went. The preview clip that ran in my head back then bore little resemblance to the actual movie that eventually played out. I honestly believed I'd be a rock star, or, failing that, a famous novelist or maybe even an actor. Of course, in order to be a famous novelist or actor one must at least make an attempt to write or act, petty details which I conveniently chose to ignore, but that didn't phase me. I was certain that destiny had great things in store for me, and that I needn't bother myself with making much of an effort to do anything, that it would all simply fall into place. I think the expression "had his head up his ass" pretty much sums it up.

I certainly never in my wildest nightmares imagined that I'd be dealing with a chronic degenerative nervous system disorder at age 46, the disease relentlessly whacking away at me, taking no prisoners and showing no mercy. Now, looking at pictures of me two decades past, from the unexpected vantage point of a wheelchair, I felt overwhelmed with the desire to somehow reach back through time to deliver some measure of wisdom to that skinny kid, to make him understand just how precious and fleeting everything he was taking for granted really was.

Back then I was nobody's angel, and got into more than my share of shenanigans, but never at anybody else's expense, if I could help it. I'm sure I wronged some people along the way, but even at my wildest I tried to be a good guy. In fact, looking back, I don't regret anything that I ever actually did, but I do regret so many of the things I didn't do. I was so caught up in my hipster brew of existential angst and bohemian brooding that I never realized just how much fun I could be having. For a few years there, it was as if life was a never-ending series of parties. I worked as little as possible (just enough to cover rent and food), spent more time in bars and clubs playing pool and playing gigs than I did in my own bedroom, and inhabited a subculture that operated for the most part completely under the radar of mainstream society.

Instead of reveling in those days of counterculture freedom, I went out of my way looking for reasons to be miserable. Now, 23 years later, I can hardly even remember the sources of all of that misery and pain, and in reality most were mere trifles, bumps along the road that I managed to magnify into perceived catastrophes. I was a slave to my emotions, completely oblivious to the fact that our emotions are born of us, not we of them, and that we have within us the power to harness our emotions and thus create our own realities.

Most of all, I'd like to scream at my young self to live life "con mucho gusto", to not let fear and insecurity hold you back from experiencing all the pleasures, surprises, and ecstasies that this brief stay on Earth has to offer. The power and majesty of youth lies in the infinite possibilities of the road about to be embarked upon, a path defined by our own decisions and, very often, by sheer luck, both good and bad. How we choose to characterize what happens to us is what separates success from failure, triumph from disaster. It is the length and breadth of those experiences that make up the vivid tapestry of a life, and all too often our fear of the negative can impede our experiencing the positive; the walls we erect to keep out the hurt can also serve to hold back the wonderful.

All but the most blessed of lives are filled to the brim with things that just plain suck. Heartbreak sucks, financial problems suck, betrayal sucks, unfulfilled dreams suck, the compromises we make just to get through each day sucks. People dying sucks, losing sucks, and getting MS sucks. I don't even have the words to describe how just hard getting MS sucks. But we must not get stuck in the suck, lest we lose the ability to appreciate of all the good that still surrounds us, from the love of those held dear to the simple pleasures of a favorite lyric or the occasional tranquility of solitude.

All of us, sick or well, must leave ourselves open to madder music and stronger wine, to cry out for it, to exult in the knowledge that despite all of the hurt we've experienced and all of the burdens we've been made to bear, we have it within ourselves to summon forth joy, to make the conscious choices that allow us to transcend the bonds of illness and sheer misfortune, to triumph in spirit if not in body. There are days when the climb is too steep, when the path is temporarily impassible, and it's okay to sometimes wallow, to allow the occasional fit of self-pity. But what I didn't see as a young man was that the key to contentment lies not in the external but in the internal, and that circumstances be damned, happiness comes to those who choose to be happy, who can find joy not because of their station in life but in spite of it.

Oblivious to the fact that 20 years hence I'd be struck with an illness that insists on limitations, I conjured up limitations of my own. Such is the folly of youth, but all too often I see in my grown-up friends and family that same predilection for self defeat. I suppose each must learn their lessons in their own time, but if my illness can serve any purpose, I'd like it to impart this lesson on those who've come to know me:

18 comments:

Marc,Well-expressed post, it is so sad that it takes such loss before many of us are able to envision and work toward a more positive reality. I hope you will be honored if I pass this along to my youngest daughter who is going through some difficult times, both medical and personal, and seems to be mired in despair. I will be eternally grateful if your words can succeed where mine have failed.

Once again your words have inspired me. I am going through a tough situation right now with my boyfriend and all I am after is happiness and right now I can't seem to find it. This quote really spoke to me, "...and all too often our fear of the negative can impede our experiencing the positive; the walls we erect to keep out the hurt can also serve to hold back the wonderful." That is exactly what I am going through right now. Do I break up with a person who isn't making me happy just to stay "safe?" However, if I don't do this, will I be missing out on finding the one guy who DOES make me TRULY happy? It's a battle I've been fighting for the past month from the moment I wake until the moment I fall asleep, and my only relief from it is when I am sleeping. I just need to muster up the courage to do what I know I need to do. I feel wrong speaking about this situation since it really isn't anything that is really life changing, but your words from this post really spoke to me.

I just love reading your posts because they are so touching and true. The more I have gotten to know you the more I really strongly dislike this situation you are going through and the trials and tribulations that come with it. I wish there was some way your MS was like the common cold and one day when you woke up, it would just be gone. Poof! Just like that! You have become one of my dear friends and probably one of the most inspirational people I've come to know. Like you said, 23 years ago, you never would have guessed that MS would be apart of your daily life, but also I bet 23 years ago, you never guessed you would become such an inspiration to so many people one day. Well, that one day has arrived and everyday when I look at the picture you sent me that I now have hanging in my room, I remember your words and thank God for the day that has been given to me. You are changing lives, Marc and I can say that confidently, because my life has been positively changed since knowing you.

Marc,Pearl Jam, my fave group (even tho I'm 54), said it best in their song "Better Man" (which Eddie hated): "waiting for the world to come along"

How many of us did this? Expected Life to come and present opportunites to us? In fact, we need to create those opportunities in which we can use what we have been given to the best of our abilities.Sadly, your post sounds like the mourning of my 88 year old father in law.Hope you can realize that you are now using the opportunity of a lifetime...speaking to the world from a wheelchair, and giving voice to all of us disabled...Keep on using your gift, sir. And I hope you come to realize that you are now living your dream...

You are so right, Marc. As they say about youth...'tis wasted on the young...Life has piles of lessons for us to learn, but I think that one of the most important ones is to take responsibility for your own happiness and to stop blaming everyone else for what befalls you. We all waste too many of our "nanoseconds" on earth engaged in self-pity and blame. Carpe diem. Wishing you good health in every way.

AMF-I am honored that you'd think to pass my post along to your daughter, and I hope it does some good. Please let her know the Wheelchair Kamikaze is wishing her the best, and knows what it's like to be stuck in the mire of despair. The only way out is through, and the only one who can get you through is you.

Anonymous-thank you, and you're welcome.

Chelsey-you're a terrific young lady, and you deserve to be with somebody that truly makes you happy. Don't let the fear of being alone for a little while keep you in a situation that you know in your heart is wrong. The alone times are when we really learn who we are, and open us up to new possibilities.

Thank you for your all too kind words about my posts and their ability to inspire, I'm humbled to think that the connection we've made has helped you as you pick your way down the road of life...

WW-not beating myself up too much, I've come to really like that young me, who is still alive and kicking inside of me. I couldn't be who I am today if I hadn't the person I was yesterday, and I think it's important for everyone to embrace all of the "me's" they've been in their lives.

Anonymous-thank you so much. The last few weeks have been a little rough, and the kind words of you and your fellow commenters really help a lot.

CM-I've been thinking of collecting the essays I've written for this blog, and presenting them to a publisher along with my photos to see if there be any interest in publishing a book of photos and essays. Thanks for the encouragement...

anonymous-don't think I could be a novelist, but I am getting more confident about my ability to write about my experiences, and the lessons learned along the way. Thanks.

Anonymous-you know, I actually have realized that in many ways MS has forced some of my dreams to come true. I wrote about just this topic in an essay called "MS: Devil in My Details". It's listed in the favorite posts list up on the left of this page.

Anonymous-they are indeed in nanoseconds that we have here on earth, so there's really no time to waste. Thanks for your wishes of good health, and sending them right back at you...

After reading about the resistance and postponements for treatment on TIMS, I checked my clock as it seemed time for more wisdom from the Kamikazi; I needed a large dose of Presence which I seem to get from your posts. That is the best way for me to explain what I experience while and after reading your offerings. Especially today I wanted to grab a highlighter.

Presence. Courage, patience, acceptance are all necessary for me to be more present to the ordeal which is a large part of my life now in my 50s. Thank you for all that you give me. It is a lot. I'll check my clock again in a few more days... Aliyah

Love the Blog Marc, its chalk full of cerebral & spiritual vitamins. It brought back memories, many moons ago when I would toy with the idea of confronting a ominous challange just to put myself to the test. I guess thats what they mean by 'watch what you wish for'.Progressive MS is not exactly what I had in mind as a character building challange. If I could just say 'uncle' like the days when I was being pulverised as a youngster and it would be over and done with no biggie. But, as you eloquently shared with us, that fear and rejection of the negative can impede our experience of the positive. I just need to be reminded of that on a constant basis. I'm a slow learner.Thanks,Jim

you are such the man. it sucks that it takes this illness to teach us our life lessens. i dream of being under the streetlights playing streetfootball, or "running" to the store, or complaining about what a bitch soccer practice was. could this crap all be a dream???i keep telling myself to enjoy what i have not what i dont. Man its so much easier to say than to do. Why in retrospect was i so worried about lifes vices? Mr proud. I want to try it again.Greek

Marc, my MS brother. I love you. I don't believe MS has taught you a thing. I think it has magnified who you are. With any crisis we have the opportunity to decide what it is about us that will be magnified. You have chosen the good, brave, supportive ... many of the things people aspire to be.

All there is is NOW. That's the beauty of it, isn't it? We don't have to relive our yesterdays or contemplate our tomorrows. We just have to live a good NOW. Thank goodness ;)

Well put Marc! Reminds me of a late-night conversation we had not long after Carrie introduced us. A lot of what you're expressing I "understood" intellectually through past studies in Buddhism, but it took years to actually experience in my gut.

Love the blog! You are a Bodhisattva! We look forward to hanging out again very soon brother.

"The only way out is through, and the only one who can get you through is you"... great message Marc, so true...(ha, continuing the rhyme) Thanks for yet another eloquent and provocative post. (prairiegirl)

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...